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Breaking HIV stereotypes

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HIV activist Jyoti Dhawale Surve is inspiring women like her around the world to go on treks, marry who they love and do whatever it takes to step out of the shadows.

Jyoti Dhawale Surve has always had the odds stacked high against her. She’s suffered from bilateral sensory-neural hearing loss since she was three, which means she can only hear sounds that are 80 decibels and above, like the sound of a train’s engine.

Her marriage was a horrific saga of rape and forced abortions, during one of which she contracted the HIV virus due to medical negligence. But each successive blow only seemsto have taught Jyoti to fight back harder. And today, the 39-year-old is taking up cudgels on behalf of the millions across the world who live with HIV and AIDS.

“I wanted to become a fighter pilot but couldn’t due to the hearing disability.” So Jyoti found work wherever she could: as a librarian’s assistant in Delhi, a hospital supervisor inRaipur, a sign language teacher in Mumbai. When she got married in 2004, Jyoti hoped life might ease up a bit, but her husband turned out to be abusive.

“He refused to wear a condom even when I insisted. Even today, marital rape (in India) is not recognised as a crime.” Jyoti underwent three abortions in a span of two years. She tells us she destroyed all the paperwork from these procedures for fear of the social stigma she’d have to live with if they were discovered. However, things changed completely when she discovered she was pregnant for a fourth time. “Doctors told me that I was HIV positive. That broke my spirit but I still decided to go ahead with my pregnancy.”

When Jyoti gave birth to a healthy baby, her happiness was complete. However, a few months later, her husband asked for a divorce. Jyoti later found out that he was cheatingon her. She claims that her husband forced her to sign the divorce papers and took their son with him,promising to grant her visitation rights. “I have not seen my son since 2009 and am still looking for a lawyer to help me.”

Jyoti immersed herself in work and signed up for the graveyard shifts at an IT company in Mumbai. Here she met Vivek Surve in an online chatroom.

Jyoti’s HIV-positive status didn’t affect Vivek and they were married after two years of dating. “It has been almost five years since we have been together. He is HIV negative and together, we are trying to break the stereotypes associated with the virus.” Vivek’s support gave Jyoti the courage to be unafraid. She became active on social media and started sharing pictures of her everyday life to motivate people living with HIV/AIDS.

Jyoti’s posts caught the attention of US-based The Well Project that focusses on women and girls in the fight to reduce incidences of HIV and AIDS. She was asked to write for theirblog ‘A Girl Like Me’ and promote understanding of HIV in India through her online posts. She’s also the global ambassador for Pakistan-based Beydaar, an organistion that workson various social issues and provides assistance to patients on issues like health, medication, wellness and matrimony.

She is also the Indian ambassador for The Stigma Project (USA) and educates people about living ‘HIV Neutral’ lives—free from judgement, fear, alienation, ostracisation and hatred.“By associating with these organisations, I am encouraging people to come out, fight the taboo that HIV has become and change the mindset of society.” Jyoti is doing her bit to dismantle the edifice of discrimination because she’s figured out a powerful lesson: “If you want a beautiful world, then don’t just wish for it, create it yourself.”

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